As a severely affected #MECFS patient, I was saved by people who didn't duck away

[SWAlexander]

because there is no routine care for ME/CFS in the system, but felt "in charge" of me as a person and were willing to give treatment that made sense in my case to make it possible for me - against immense hurdles! Doctors and a therapist who not only helped me to get therapies but also carried and endured me and my illness when I had no strength and unimaginable symptoms. In search of therapy, under conditions for #MECFS severely affected, we found only one offer, far away in the north. I was brought about 800km under sedation to Schleswig-Holstein to be allowed to do an immunoadsorption. I was also lucky that the doctors there took me seriously and listened to my story and included my own suspicions about my symptoms in their therapy evaluation.
As a result, according to my clinical picture, my neurology department also prescribed #Fycompa, which helps me with my brain symptoms and gives me more energy. I was incredibly lucky to get such support, unfortunately this is an absolute exception, because #mecfs is trivialized by most doctors and classified as psychosomatic. Most patients do not receive adequate medical care. That was also the motivation of my helpers: to show that even the most severely affected can receive treatment if the system adapts accordingly.
That needs to change! The disease can already be treated in constellations like mine and the health system must be aligned accordingly by those responsible, even for the most severely affected among us, who for the most part continue to disappear without any medical care (#millionsmissing)! I would like to once again express my infinite thanks to
@BrockAnnaDr
@GrandeBettina , team of Schleswig-Holstein,
@C_Scheibenbogen, Dr T. Kees, Dr R. Eichholz and
@malteserDE . May you be rewarded for your charity in this life and the next

https://twitter.com/i/web/status/1621930231689781251

 

[SleepingGirl]

Was hoping this would be posted here. I do remember reading that some people had tried immunoadsorption and it didn't work for them, I think it was only for one session though. Makes me wish my country had this, anyone else here that has had access to immunoadsorption and has it worked for them?

 

[SWAlexander]

anyone else here that has had access to immunoadsorption and has it worked for them?

Dr. Kiprov has worked in the field of Therapeutic Apheresis for more than 30 years and has published extensively on this subject. He speaks about a hemophoresis plasmapheresis apheresis in long covid and the vaccine injured. Start at: 1:42 min into the presentation.

In my opinion, this is the most effective approach to immunoadsorption. As we have learned so far, the body cannot filter out effectively. I tried to contact Dr. Kiprov without success.

 

[SWAlexander]

Endothelial dysfunction in ME/CFS patients
Abstract
Objective
A few earlier studies have found impaired endothelial function in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The present study investigated large-vessel and small-vessel endothelial function in patients with ME/CFS.
Study design
The study was a substudy of the RituxME trial, a national, multicenter, randomized, double-blind, placebo-controlled phase III study on the effect of rituximab vs. placebo in ME/CFS patients in Norway. Flow-mediated dilation (FMD) and post-occlusive reactive hyperemia (PORH) was measured at baseline and after 18 months of treatment in 39 patients and compared with healthy controls. Other outcome measures were symptom severity and various physical function measures.
Results
ME/CFS patients had markedly reduced FMD compared to healthy controls at baseline (5.1% vs. 8.2%, p< 0.0001, adjusted for arterial diameter and sex), and significantly lower microvascular regulation measured by PORH than healthy controls (1354 PU vs. 2208 PU, p = 0.002). There were no differences between the treatment and placebo groups in symptom changes or vascular measures. As a group, the ME/CSF patients experienced a slight, but significant improvement in clinical symptoms after 18 months. PORH, but not FMD, was similarly improved (1360 to 1834 PU, p = 0.028). There was no significant correlation between FMD and PORH. There were non-significant tendencies towards associations between symptom severity/physical function measures and lower FMD and PORH, and a significant correlation between PORH and steps per 24 hours at baseline.
Conclusions
ME/CFS patients had reduced macro- and microvascular endothelial function, indicating that vascular homeostasis may play a role in the clinical presentation of this disease.

Figures
See chart: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0280942